From a BBC news article, “I think that there is a huge role for philosophical reflection as a way of changing our attitude towards events over which we have no control…We have to learn to make sense of a finite life.” Philosopher Havi Carel uses the tools she understands best to place a personal perspective on her own terminal illness. She is working on a book due out in the fall titled Illness (The Art of Living). I’m sure it will contain reflections similar to the one’s she mentions in the longer article of last March from The Independent,
“Illness breaks down the neutrality and transparency of our bodily existence. But it has also given me perspicuity. I observe my life and the lives of others and see them for what they are: brief, full of emotion and agony, activity and joy. I see people arguing over nothing, worrying about wrinkles and careers. Illness makes you immune to that. From the loneliness into which my illness forced me, I became able to see the world anew.”
Her’s is a different way to view illness: as an emotional world that can incorporate well-being and the possibility that you can be ill and still happy. It is an unexpected hypothesis and one that depends on a different and more creative approach and attitude than most of us are used to, or maybe more than we are even comfortable with. After all, no one says they’re sick or terminally ill with a smile. Or do they? Which is why this a useful bit of mind-bending.
To be sure Dr. Carel has creativity to spare. On doing a bit of further research I found an article she authored (from SCAN, The Journal of Media Art and Culture) that appears to draw from similar themes only in a very off-beat and fascinating way, with a really terrific bibliography at the end. I won’t reveal too much about it since you only have to read the first paragraph of the link to see where she takes the essay, but I will say it involves illness as a metaphor to one of the most horrific monster movies of all time. The one that completely freaked me out when I was a kid and to this day I can’t bring myself to ever watch again. To draw such parallels you certainly do need to be an out-of-the-box thinker. (Thanks to Chris at Crooked Timber for the heads-up).
Although it has a bland headline, this article from the NYTimes is so much more important and interesting than that other story grabbing attention about the guy who bought a coffin branded as a can of PBR beer (you can search for it but I won’t bother).
I find this idea of “slow medicine” compelling because I’m familiar with similarly named movements, like slow food, and slow leadership. Such labels are more honestly about simply increasing personal awareness of your environment and those conscious decisions we each make about how to best operate within that environment. They also all seem to echo the meditative principles of the Eightfold Path where the wisdom and ethics of alleviating suffering are really about doing the right thing.
I think the conflict we feel when it comes to end of life care relates to the values we project onto others–the choices we would make for ourselves in similar situations, which might not be the best choice for another. For example I remember my brother, in emotional distress, telling me we had to do everything possible to “save” our father, “to give him a fighting chance.” Dad was at that moment in and out of consciousness, breathing artificially, in an ICU due to a virulent strain of pneumonia. Since he couldn’t be consulted (and I only suspected what he’d want based on my own prejudice) what was I to do? Play the angel of death? I asked my brother to what end would we be keeping him alive? He had suffered several strokes and was blind in one eye. He had been nearly deaf for years and to add insult to injury he suffered from dementia associated with Alzheimer’s. How heroic should we tell the doctors and nurses to be? In hindsight I understand and still remember my brother’s panic. Doing anything at all seemed better than the waiting and helplessness of a bedside vigil. He was angry with me and lashed out by saying he wouldn’t want to be under my care because I’d probably pull the plug the first chance I had. It was a difficult situation and hard to hear. Just like this list from the CDC on who gets lifesaving care in a pandemic is a difficult one to read.
As the doctor in the article states, our love of life has predisposed us to aggressive care. I don’t believe the real question is even about cost or risk. It requires we ask when our honor, dignity and humanity requires that while we may not welcome it, we allow death to take its course because it is the right path. And the right answer will often be hard to accept, making the right choice life-changing.
That is a quote from an Emily Dickinson poem and the title of Joyce Carol Oates‘ new book, Wild Nights, Stories about the Last Days of Poe, Dickinson, Twain, James, and Hemingway. Liane Hansen (NPR) interviewed Oates this morning and I learned this book is a group of fictional memoirs written in the style and voice of the authors which reinvent climactic moments toward the end of their lives.
I recently wondered if someone would create something like this, even mentioning Mark Twain, and here it appears! Amazing. I can’t wait to read it. The radio interview was too short but revealed a few real personal idiosyncrasies the stories were built on, opening with another great quote from James that JCO keeps posted above her desk: “We work in the dark—we do what we can—we give what we have. Our doubt is our passion, and our passion is our task. The rest is the madness of art.” How true, we do what we can, we give what we have and as JCO says, “…we can, in times of emergency, be so different from our previous lives.” Which is how her reincarnation of James spending his last days working in a hospital changes him. In reality Dickinson never left her house after age 20 and left behind 776 insightful poems but in an alternate history JCO makes her into a replicant, a robot purchased for entertainment but who ends up instead revealing the poverty of her owner’s lives. Finally, Liane also briefly mentioned Ray Smith, Joyce’s husband of over 45 years, who passed away this last February which I’m sure made finishing this novel even more difficult for her. Her reply about how tired and unmotivated his passing has made her makes me wonder how much more she will feel compelled to write or if her “madness” has left with the departure of her long time companion’s support and strength. Well, it’s time to trundle off to the library to make another new book request. Sundays are a good day for that.
Dr. McCoy was always so straight-forward.
Last year Randy Paush and his 70-minute talk, now known as “The Last Lecture” become extremely popular. Now it has become an inspirational book containing “ideas for achieving one’s childhood dreams” which has spawned a “…contest seeking examples of great parental advice either dispensed or received.” I have mixed feelings about this.
I’ve read that Paush was astonished at his sudden notoriety and only cared about “…the first three copies of the book.” One of his friends said, “Randy never, ever had any expectation that his lecture would turn into the phenomenon that it has become. The main reason it was taped at all was so that his children, especially his younger two, would know something about him.” At around the 55 minute mark (where it deepens into something more than a professional resume) he shares his success depended on the blessings he was born with and talks about the wisdom imparted by those closest to him. A contest doesn’t quite mirror the intent.
Whether Paush (or hundreds of comments) inspires you or makes you cringe shouldn’t matter. Leaving something personal after death is very common. We all have something intimate to pass along. What should matter is that we be encouraged to do so regardless of children. While wisdom isn’t the strict purview of the dying, or even the old, those groups do tend to have a sharper focus on the essential. And despite Paush’s claim that the “headfake” of the lecture was that it wasn’t intended for the audience, his reflections enlightened everyone who saw it. I wish the Times had used the opportunity to promote ethical wills to their readership (which I’ve mentioned before). I realize all the hype over social media encourages us to feel like everyone must want to read our pearls of wisdom (honestly, they don’t). But unlike blog posts your “final love letter” isn’t addressed to the world. It is written to a few very specific people who mean the most.
There are already 324 comments (and counting) of people sharing their advice with strangers on a web page that will soon enough go dark without benefit to anyone. Whereas if they’d taken the same trouble to write these thoughts in a letter, included a photo or two, and put it in a safe place (–even reviewing it once in a while), it might just survive long enough to make a deeper impression. Much more valuable than a fleeting contest with a questionable prize. As much as I hate to admit it, I understand why people would rather leave a public comment than write a personal letter.
The insightful Venn Diagrams of Jessica Hagy and the mind-bending humor and personal history of Demetri Martin (especially when he uses flip charts or drawings) are like pie and ice cream. Perfect, delicious, simplicity. I wonder if they collaborated it would be mind blowing amazing, or if their talents would cancel each other out. Maybe they even already know one another and share ideas. Anyway, together with “Wait, Wait” they are all good for a Sunday smile. See, it’s not all death and dreariness 24/7 around here. There are always times when a little humor steps in for balance.
That’s the traditional comeback line to a long stare. Yet there are some things we just can’t help staring at in order to capture an essence that escapes us at first glance. That is what the photos of Walter Schels and Beate Lakotta do for me. They cause me to examine them so closely I find myself staring, captivated by what Cory Doctorow calls, “…the difference between flesh animated and the empty vessel gigantic and unmistakable, even when the before-death shot is of someone terribly ill.” And interestingly, because of the intimate juxtaposition of life before death and the amazing brief stories they tell about their feelings towards that death, they are more powerful than the similarly somber cabinet cards or postmortem photography of the late 1800s (where equally as many children as adults were photographed).
Pulling out a camera after death must certainly be difficult emotionally. I know it never occurred to me to preserve that particular moment. It’s also hard to judge what might be insensitive behavior toward other family and friends in attendance at a deathbed who might consider it an intrusion or at least be uncomfortable with it. It’s true we can watch it in the abstract on tv, or in movies, or in games, but there does seem to be something odd about, “lights, camera…inaction” when someone you love is involved. (Photo credit: Paul Frecker collection of 19th century postmortem photography)